Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript  04-03-2010

Topic:  Open Forum

Host: Lou Tudor


murf: morning
loutudor: Morning !
loutudor: Thanks for voting on the Pepsi project!
loutudor: Good morning guys!
Stan: Good Morning
UTE: Good Morning Lou and Murf
murf: I sent it to lots of people on my FB list
loutudor: Hey Terry!
TerryW: [b]hi
murf: big run through the doors ... morning everyone
loutudor: We need lots more votes!
loutudor: How's the landscaping Murf?
TerryW: [b]I just dropped in to say he before I head back to bed
murf: done all but one plant
loutudor: Sorry you're sick, Terry! Take care...
Stan: Still not feeling well, Terry?
murf: get well Terry
loutudor: Is that a special plant??
TerryW: [b]thanks, this one is really taking its toll on me
UTE: How are you doing Terry? You take care
Gary_KC: Good morning. This is Gary joining in from Kansas City. It is nice weather here with 46 degrees this morning.
murf: no just ran out
loutudor: Morning, Gary!
Gary_KC: Hi loutudor.
loutudor: Morning Ted!
loutudor: Terry, is this a cold or the flu?
loutudor: Morning Wisconsin!
TedA: Good morning everyone
TerryW: [b]It is now fully in my chest
loutudor: No pneumonia I hope...
Stan: Is the nebulizer helping at all, Terry?
poohsdaddy: Good Morning and Happy Easter to all....
TerryW: [b]the nbulizer is helping abit for when my breathing gets really short
loutudor: Happy Easter!
loutudor: Hey Paul!
Paul Sramek: Hey
loutudor: Is everyone voting in the Pepsi contest??
Stan: Hi, Jeff. Happy Easter
TerryW: [b]not sure on the pnemonia Lou, I have not been back to the docs yet but it feels like it
TedA: yes, thanks for the reminders
TerryW: [b]taking the same meds that they would give me if I was in the hospital with Phnemonia
loutudor: Morning Minnesota!
UTE: Pepsi has my vote today
poohsdaddy: I just got the e-mail about Pepsi, and will forward it to all my friends and relatives....
TerryW: [b]We are voting like mad
loutudor: We need votes once a day for all of April...
TerryW: [b]Big facebook campaign running
poohsdaddy: Morning Stan... Thanks for finding me on Facebook
Gopher: Morning
loutudor: I sent it out to most of my e-mail address book...
TerryW: [b]Sorry all, I need to go lay back down, chat at you next time
TerryW: [b]goodbye
Stan: Yes, I've voted three days out of three. So have my wife and kids. The rest of my family and friends have received an email and I have it posted on FBook. I also discovered that some of my former co-workers found me and are voting.
Gopher: We're voting....thanks to who ever wrote the grant.
loutudor: There's a lot of our guys not able to get funing help this year...
Stan: Jeff, no problem. Always looking for new friends.
poohsdaddy: Terry.. Hope you feel great before the next chat
loutudor: This is a team project!!
Gopher: We need help finding info on anethesia...Roger needs gall bladder surgery. Where do I look
Stan: There is some information on the KDA site regarding anethesia. I think there was also a forum topic on that.
loutudor: Plenty of info on the KDA home page and then your doctor should refer to a specialist...
Gopher: I've seen it before and now I can't find it on the site???
poohsdaddy: I had gall bladder surgery a couple years ago... And the Anesthesiologist just needed to be aware of the Kennedy's Disease... And the surgeon did it laproscopically (much safer than normal operation).
loutudor: Send me your e-mail This email address is being protected from spambots. You need JavaScript enabled to view it.
Gopher: Will keep looking.
Gopher: This email address is being protected from spambots. You need JavaScript enabled to view it.
loutudor: Thanks, I'll find it for you
Gopher: Thanks!
loutudor: Everyone else staying well?
Gopher: We scared the AZ doctors so they wouldn't do surgery and neither would Minnesota. Now its to the point where he doesn't want to wait any longer
TedA: had a head cold for 4 days over last weekend other then that just getting weaker.
loutudor: The laproscopic surgery is much easier now...
poohsdaddy: Doing much better today, but had a minor setback on Wednesday and Thursday. Just was exhausted and needed to rest.
Gopher: Yes, but U of M doc says there are sometimes complications with getting it out
loutudor: Here in FL, lots of folks having trouble with the high Spring pollen count...
Stan: Gopher, the link on the KDA site is under General Tips/Surgery Concerns.
loutudor: Thanks, Stan :)
Gopher: Thanks
Gopher: I'll sign out and see if I can find it.
loutudor: I'm working today with one eye patched...cataract surgery went well
poohsdaddy: Is everyone ready to celebrate Easter... and have time with family ??
loutudor: I have both adult children here with us for Easter this year
poohsdaddy: Two of our three sons will be coming here for the traditional ham dinner... with grandchildren.
loutudor: My daughter is cooking...what a treat!
Gopher: Found it Thanks!!
poohsdaddy: Our eldest son lives in Philadelphia; and can't get here very often.
loutudor: We have an upcoming Spring newsletter in progress. Anything special anyone would like to see included?? Ideas??
poohsdaddy: My job for the preparation is to peel the potatoes...etc.
Stan: Winning Lottery Numbers?
loutudor: HA! Lotto KDA winners!
poohsdaddy: Lou, Did we come up with any items to sell on e-bay as was suggested in an earlier chat ?
UTE: Wow...if I tried peeling I'd be peeling my head or fingers instead
loutudor: Not yet for something to sell? I'll put an article in the newsletter
loutudor: We have several members with Seller would only have to ship the item...and be reimbursed for the postage.
Stan: I submitted an article. Hope it's good enough. It's been years since I did that type of writing. Worst case, I'm asked to not write anymore.
loutudor: Stan, I'm sure your article is great...
poohsdaddy: I have a lot of ""collectibles"" with the School Bus and Postal themes. I drove bus part-time and worked as a postal carrier for over twenty years. It's amazing how much a person can accumulate.
loutudor: We need more participation...I'll volunteer to type it up if someone wants to submit an article
Gary_KC: loutudor, will healthcare reform affect anything for disability? I hope not. If it has changes, please include in the newsletter. Thanks.
loutudor: The stuff for the postal and bus sounds like good stuff to sell on ebay....
poohsdaddy: Do you have info on current research ?? or any studies coming up in the near future ??
loutudor: Gary, I wish I knew more about what's going on with healthcare...
TedA: or clinical trials?
Stan: I can provide a copy of the 2000 page HR3200 document for review. lol
loutudor: Any info on clinical trials will be sent out immediately...
loutudor: Thanks, Stan :))
poohsdaddy: I think that most of us (KD-ers) would do almost anything to help find a treatment.
loutudor: Who cares more about us than the KDA!!!
Stan: Our families.
loutudor: I've found that by putting out this Pepsi contest info, many people are being enlightened that we need help in a lot of areas...
loutudor: Families members are all affected by this disease...not just the one who has KD
poohsdaddy: Does anyone know how KD affect testosterone level ?? With recent blood tests, my doctor said mine is borderline ""low"". Just above the 300 mark. No prescription though. Too much of it ""promotes"" prostrate problems.
loutudor: Yes, testosterone is affected. That topic is also addressed on our website
Gary_KC: Have NIH published any papger after dutasterid PH2 traial? We know that it did not help us but we have not seen the detail for the traial.
loutudor: I'll check on that, Gary...
Gary_KC: loutudor, thanks.
loutudor: Murf, are you there or in your new tub???
poohsdaddy: Do KD-ers also have more brittle bones than the average males ?? I've broken my leg twice in the last six months; and had to have surgery and nursing home stays to recover.
murf: not in the tub
murf: falling asleep in my chair
loutudor: KD patients have more falling incidents...far less agility
Stan: Not sure. I do know that a number of KDA members have broken bones. I have never broken a bone, yet, but I've had plenty of opportunities.
murf: scared to take a bath still
loutudor: Murf, submit some of your jokes for the newsletter... :)
UTE: I guess it's how you fall...only cracked or broken most of my toes (metatarsals)
murf: adult content only ... are you sure?
Stan: I kiked some of the jokes I saw on the KDA FBook page.
Stan: liked
loutudor: All submissions are blessed by the editor...:)
murf: ok
loutudor: I think the topic of falls and preventing injuries might be a good topic for the newsletter...
poohsdaddy: I can't remember any jokes lately... even though I get a lot of funny e-mail messages.
UTE: I don't know about brittle bone...but pretty sure I have less bone density in my toes
Gary_KC: pooh, I took leg bone density test last summer. The result was a high risk. So my doctor suggested me to take calciam with vitamin D.
TedA: I use to be able to somewhat control the way I fell and landed, but now it is just fall and pray that I do not get hurt
loutudor: Ute, a good topic to investigate...
loutudor: could write about your bathtub incident!
poohsdaddy: When I was in the nursing home... one of the discussion group topics dealt with safety in the home and especially the bathroom. I found that very helpful. Mostly common sense information. Like turning on a light and Not trying to walk barefoot ever again.
TedA: Calcium is also great in stopping the facial tics or twiches
murf: ok
loutudor: Do any of you wear special shoes...??
UTE: A funny line from my daughter visiting from Arizona was that it took several family members to get me to and in the car...and then... we let him drive!!!!
loutudor: Another great story, Ute!
TedA: I have night lights in the bathroom and other places so I do not have to get up at night in total darkness. They have been a great help to me.
poohsdaddy: Ditto, I have increased vitamin D to 4,000 units and calcium to 600 mg daily.
loutudor: I hadn't heard that Calcium helps with muscle twitches
UTE: I like to only wear Nike airliners... but over the years my foot with neuropathy has a cushion feeling without the shoes
Gary_KC: pooh, I agree with you. I am always worry about falling down in bathroom.
poohsdaddy: My vitamin d level was less than normal... I've also been taking potassium pills for years to alleviate the leg cramps and muscle spasms.
loutudor: I have been told that no heel on the shoe helps...
TedA: I eat a banana with my breakfast evey day to get the potassim
Stan: I just drink milk and eat bananas for my calcium and potassium needs. Don't need any supplements yet.
Gary_KC: My doctor suggested me to vitamin D over 1000 units daily.
UTE: I'm just the opposite, I worry about falling in a I have a tub thats about jaccuze height with the hand or soap spots on the side to climb out...and slipped in the tub once and broke my ribs
poohsdaddy: Cantalope, kiwi fruit and baked potatoes are also said to be good sources of potassium. I like all of them.
loutudor: Ute...ouch! showers are dangerous
TedA: No heels makes sence to me. My shoes are the slip on type that do not need tying laces and most of then do not have a real heel.
loutudor: Thanks, son has difficulty with finding the right shoes
poohsdaddy: We've had to make a few modifications to our bathroom... Hand rail, elevated toilet seat, and shower chair within the last few months.
loutudor: I used to give my Dad B-12 injections...not sure if it helped
Paul Sramek: I have a question..because no one in my family has KD & I am just over the line [44]. The oldest of 8. ....I was in the Submarine wife thinks that it caused the on set of KD...Are any out ther in the sub service?
loutudor: Pooh, good safety additions..
loutudor: My Dad was in subs...
Stan: Nope, none here.
UTE: Even with everything elevated, I still have to push both hands with arms stretched just above the knee to get up... back can't do it alone... does anyone else do it too??
TedA: 4 family members with KD and none in submarine service
poohsdaddy: YES Lou.... I also take Vitamin B-12. It helps with stamina and metabolism. My neurologist also had me try Provigil for a short time. It was too expensive to keep taking for any length of time, but it helped.
loutudor: If possible to afford, the electric rise chairs are a great help...
UTE: I was in the Navy but shore duty in Oregon and Korea... almost put on sub
Paul Sramek: Spent my time on The Mackerl T-1 Key West
TedA: I use ca comode over the toilet because the ADA toilet is not high enough. I have been lucky NOT to have to use a public toilet where I would need assistance to get up. At home I can take the pants off and therefore spread my feet wider and have better balance.
loutudor: If you aren't already participating, please join the KDA in the Pepsi contest. We have a chance to winn $50,000. to help our members in need
loutudor: Thanks for being here today, Guys...I'll stick around if anyone has more to discuss...
poohsdaddy: Thanks for the reminder... I'll send the ""challenge"" today for friends and family to vote for KDA>
Gary_KC: UTE, my both legs are very weak. I can not stand up at all. So I slide from wheelchair to a large shower bench. Shower bench is better than shower chair.
loutudor: TYVM Pooh!
TedA: Thanks for another great chat!
loutudor: Thanks, Ted!
Paul Sramek: See you all next time.
loutudor: Bye Paul
Stan: Chat with you all next time. I have yard work to do before it starts to rain. Take care.
loutudor: Bye Stan
UTE: Great meeting Lou...happy easter to all... go Spartans!
Gary_KC: Bye all.
poohsdaddy: Thanks to all... stay upright til next time. Happy Easter... Bye. :)
loutudor: Bye Ute!
loutudor: Have a great Easter Guys!!
loutudor: Murf,,,get out of the tub!! :)
murf: lol ok
murf: cya
murf: thanks
loutudor: Seriously, send in your jokes/or tub story!
loutudor: Bye